Saturday, August 22, 2015

Back in Denver

Only days after returning home from our last surgery and hoping to be admitted to the hospital for monitoring, Jude's shunt was no longer working. It is common that these need to be replaced during pregnancy, and so we hoped that we would be able to try one more time. However, after consulting with our MFM and surgeon, they decided that we would not be candidates to try the procedure again. Because Jude's belly has been so stretched out, his skin and muscles on his belly have become very thin, a condition known as prune belly. Our surgeon believes that because the skin is so thin, once his belly decompresses from an effective shunt, it actually closes in around it - not allowing the passage of fluid.

At first, our MFM gave us the news that we would not be able to try again - and did so in a way that left us feeling hopeless again. He told us that even if Jude was able to be resuscitated after birth that the children's hospital in Salt Lake would not be able to put him on dialysis due to his prune belly. And so, even if we made it past our first hurdle of lung function - there would be no hope going forward. Also, if for any reason I went into labor early - dialysis would not be even be an option in SLC until he was over 5 1/2 lbs. He again gave us the option to deliver at any point - assuming the outcome will be the same regardless.

Realizing that our MFM has always been extremely pessimistic, or "realistic" in terms of describing the outcome for Jude, I texted our surgeon asking him to call us so I could better understand the reasoning of why we could not try again. When our surgeon called, he described the exact same situation but instead of telling us there was no hope at all as our MFM had, he told me the opposite - that he didn't want to get my hopes up too much. He explained that perhaps there had been enough fluid around Jude following each surgery to give him the lung function he needs to survive. He also hinted that although we could not go to Denver for another surgery, that we should weigh our options as to where we would like to deliver - and gave me his confidence that the hospital in Denver would be able to offer us very aggressive treatment in terms of resuscitation and dialysis.

The decision to come back to Denver was just as easy as it was hard. We know that this is where we need to be, if only for the peace of mind in knowing that we did absolutely everything that we could. And honestly, although I will be away from beautiful kids for much of this time, it is so much easier to endure through in an environment where everyone is hopeful and fighting for Jude just as hard as we are. If Jude doesn't live, it's ok - but the hope that we have here is what I need to get through the rest of the pregnancy, rather than being back home where our team of specialists believe there is no hope at all and that we are just continuing to strain ourselves physically, emotionally and financially.

The plan now is to deliver at 34 weeks, as is standard with ruptured membranes. Vahe and the kids will be coming to visit on weekends over the next month leading up to delivery. I wish that our whole family could be here together, but Vahe needs to be back in Utah so he can work part-time while taking on the role of (the cutest!) Mr. Mom full-time. I feel so blessed to have such a wonderful, supporting husband through all of this. Just the normal emotions of this situation supplemented by pregnancy hormones have made this mama a wreck over the last few months, and in addition to supporting our family while finishing up his last semester at BYU, he has held my hand and dried my tears through it all.

This trial has become so much more than the outcome of life or death - but of heartache, guilt and uncertainty. Of course I want our son to live, but I really know that we will be okay if that is not God's plan for our family. What has been so hard for me to deal with is just not knowing. And, in that uncertainty, trying not to give in to the adversary who is convincing me that it is my fault - and allowing me to experience a darkness that I have never known. It's amazing how the atonement has started to apply so much differently in my life now. I know if anything, looking back, I will be grateful for the new perspective I have gained on our Savior's infinite, eternal, and unconditional love though this trying time and process.

Once Jude is born, we will reassess our plan as far as where we will be living. If he survives, we will likely all move to Denver as he will have a lengthy NICU stay. If he does not, then we will go back to Utah and work through the next phase as best we can. Either way, I know that the journey ahead of us will not be easy - but we are prepared for either outcome, while still hoping for the best.

I can not emphasize enough how grateful we are for your love and prayers. I was initially so hesitant to open up about our situation online. But, in the end, I am so glad that I did because it has honestly been incredible to feel the support of so many that we otherwise do not have regular contact with. I am humbled by the love so many of you have extended to our family and once again thank you for your thoughts and prayers on our behalf.

1 comment:

Love you Leisha and wish I could be there holding you hand and available to support you. Thank you for posting your journey, this helps me feel closer and I really want to know how you and your sweet family are doing. With you in spirit and love you so much! Aunt Lisa